Post Chemo Check-in

It has been four months since my last chemo infusion on October 1 and three months since we've checked any of my bloodwork. This update comes courtesy of a busy week, though, with labs and physical therapy on Tuesday, meeting with my oncologist on Wednesday, then an appointment with my GP as well as PT on Thursday. 

Anxiety ruled the days leading up to this. It would be the first time since starting chemo that my PSA (prostate specific antigen, the cancer "gauge" for me) wasn't monitored monthly. All sorts of thoughts of this aggressive cancer rearing its ugly head in the last three months was starting to weight heavily on my mind. If that PSA was back up, it would probably mean a 2025 that mirrored my 2024, which was the worst year of my 62 years on this planet.

I tried to console myself by reminding myself that I was still on the hormone drugs designed to keep my testosterone down, and that Ground Zero for the cancer (my prostate gland) had been nullified through the cryotherapy that happened at the start of all this. Still, especially in the days leading up to my oncologist appointment, I was pretty nervous and couldn't stop thinking about the worst case scenario. My wife admits to feeling similarly.

I am very pleased to report that my PSA is now down to 0.20, which is 0.06 lower than it was at the end of October! I'm under no illusion that my cancer is now somehow "cured", especially since they reminded me all last year that my cancer is incurable. However, if what we're doing is working so well that my PSA continues to go down, meaning that the cancer is mostly dormant, I'll take it!

One of my big concerns was that, in the past month, I not only started physical therapy but also supplemented that with some low-level upper body exercises at home. My understanding is that exercise increases testosterone, which was adding to the anxiety before my check-up. I need the exercise, but will it trigger cancer growth and spread? Apparently and very thankfully, the answer to that question is "no".

Speaking of PT, it really wears me out sometimes but I can tell that it's working. My balance (which had fallen into the "absolutely sucks" range) has improved. Likewise my lower body strength. I've still got a long way to go, but anything that makes me healthier than I was last year is welcomed with open arms. 

My wife and I found ourselves out at a frozen lake in a local state park on Wednesday, after the oncology appointment. The outside temps had warmed up that day, but there was still at least 6" of ice on the surface of the lake. After spotting a couple ice fisherman out much farther than I would choose to go, I decided to venture out on the ice for the fun of it... and ice photos! I didn't realize it when I stepped out, but this turned out to be a pretty intense test of both balance and leg strength. I had no ice cleats with me, so I was literally walking around on the ice with street shoes. I'm still surprised that I never ended up with my butt on the ice!

 

 

The next day, between trying to keep myself upright on the ice and a new and strenuous PT exercise, my legs we're just killing me. As I write this three days later, my legs are still sore. As much as that might sound like a complaint, it's also so nice to know that I'm building strength, gaining more balance, and I'm able to do stuff like walk around on a frozen lake. I don't think I would have been able to do that through most of 2024.

Bottom line? This recovery is remarkably slow but it's nice to feel sooo much better than I did most of last year, and it's just a nice to know that my PSA is staying down for now. 

Zen and the Art of Battling Cancer

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Not long ago, I was having a conversation about music with a good friend of mine. My friend and I have enjoyed numerous great conversations about music over the 30 years that we've known each other. In this instance, we found ourselves talking about how some music gets past us and, on the other side of that coin, the ups and downs of only recently discovering "older" music. This led to a brief discussion of some other self-imposed frustrations we put on ourselves.

It got me thinking about how my listening habits have changed, influenced by my battle with cancer for the past year. It's safe to say that this battle has changed me in several ways, both physical and mental/emotional, and our conversation made me want to try to articulate how the past year has changed my listening habits. 

Since I’ve been sick, I’ve really embraced spontaneity in my listening habits like never before. If a post about a record or a band makes me curious (or nostalgic) I give it a listen. If something trips a trigger and invites me down into a deep musical rabbit hole, I willingly follow it in. Life is short, and none of us will ever hear all the music. Listen as you please.

I realize that the ability to stream music makes the aforementioned easy to do. I would never have been unable to listen so spontaneously even a decade or so ago. I'm a big fan of streaming music for all the investigating and experimenting you can do with such ease. (To anyone reading this who might also be sensitive to the ways in which many streaming services pay so little to the artists whose work they stream, rest assured that I often support artists I really like financially.)

Sometimes things don't trip any triggers with me. In the past I might "try" to like it with further listens, especially if it's getting good reviews. Now, if something doesn’t hit me, I might just try it again later... or I might not. Sometimes it works “later” and sometimes not, but that’s okay too. It's all okay. There are no rules.

My friend and I share a common frustration (or would "sense of wonder" be more accurate?) about certain music slipping past our radar and then "discovering" that music much later on. Here's an example: One of my sweet spots in the world of jazz is small group sessions from the late 50s and early 60s. Most of this came out before I was born. Sometimes when I listen to it, I’m both overwhelmed at how great some of that music is but also frustrated that I didn’t even know it was out there until decades later!

It was a low key frustration, to be sure, but I've never liked missing out on things musical. These days, I’m convinced that such late discoveries only enhance my daily listening experiences. New musical surprises… only of older music. I realize that my previous frustrations were entirely self-induced, but it's still nice to be free of them.

There's a Zen-like, go-with-the-flow theme emerging here. Music has been incredibly therapeutic for me since I got sick. It helped bring me out of some very dark places. I value it now more than ever ... and I already valued it a great deal! I’m not going to give a second thought to how timely I discovered something, whether or not I "should" like it, how much I know about it, or even whether I'm streaming or listening to physical media sources to hear it. 

Life is too short for all of that, except music itself.

100 Days

It has now been 100 days since my last chemo infusion on October 1, 2024. That seems like a good excuse for an update. 

I've alluded to this in previous entries, but I'm astounded at how long recovery from chemo takes. Over three months from my last infusion and I'm still weak, feeble, and my balance is terrible. I've only just recently stopped using my cane around the house for stability, but I still get around like an old man and make frequent use of countertops and door jams to maintain stability.

I just turned 62 but I feel much more like 72+ these days. Seriously.

My hair is taking an incredibly long time to grow back. I think I mentioned this in the previous post but my glacially slow hair regrowth has turned into a gauge for my healing in general. I've been very frustrated that I'm not getting better any faster than this, and my wife reminds me that my hair regrowth is a visual indicator of how long it's taking my body to recover from the chemo. That has helped me be more patient, at least to an extent. 

Matters of fact: At 100 days after my last infusion, I have 1/4" to 1/2" hairs growing on most of my head, eyebrows, mustache, cheeks, arms, and chest. (I was no gorilla before I got sick but I was a kind of hairy guy, making the loss of hair very apparent.) At a distance, I still look mostly hairless. Only my chin hair seems to be growing enough to be obvious.

Somewhere in the middle of my chemotherapy, at the end of some of those rounds, I felt well enough to go for short hikes now and then. I expected that to happen during the last week of round five and six, but the accumulation of Docetaxel in my system had built up enough that I never saw "better" days during those rounds. Little did I expect, though, that I had so much in me it would take many more months to recover once chemo was over. It will be interesting (in a somewhat perverse way) to find how long it will actually take before I feel like my old self again. At times I wonder if I will ever feel like my old self again.

In better news, I started physical therapy, and I've been working on some things that definitely seem to be making a difference in terms of strength and balance. In addition, just in the past week or so, I've started to do a few upper body exercises on the Total Gym that I bought about a year ago. (At the time I bought it, I thought I was really run down and out of shape, and it was winter. I didn't realize cancer was spreading through my body and making me feel that way.)

My physical therapy exercises are focused on hip and balance issues right now. All lower body work. My upper body was always the stronger half of me but I still want to get back some of what I lost through last year's ordeal. That's the Total Gym's job right now. I'm also happy to report that, even though I'm only doing about a dozen repetitions of a handful of exercises, it's not wiping me out. The smallest amount of exercise was wiping me out from February 2024 onward. It's nice to feel that I'm finally at least well enough to handle some minor exercises. It's been a while!

One last thing. I'm still on my anti-testosterone hormone drugs. I will likely remain on those drugs. I really have to wonder how big a role those are playing in my overall lack of strength and stamina. They've got to be playing some role!

Hairy Christmas!

Some time in December, my hair started growing back. I'm still mostly bald but you can definitely see dark hair coming in on my head and a lot of gray stubble on my chin. 

To my amazement, this didn't start until over two months after my last infusion! The first stuff we noticed was very wispy, white or light gray hair on the side of my head above my ears. Then the gray stubble started on my chin. I have heard various things from people about post-chemo hair growth, some saying it will grow in curly and others saying it will grow in gray. I hadn't noticed if anything came in curly, but I was starting to wonder if I had lost my dark brown hair. 

Thankfully, it looks like I haven't. My chin (which was already salt-and-pepper before I got sick) isn't showing any signs of dark hair, but what's coming in on my head is more dark than gray. My beard is not growing very fast on the sides of my face, making me wonder if it's going to come back in dark but, somehow, the dark hair is taking longer?

Anyway, I'm happy to see my hair coming back. It's still probably going to be another month or so before I have enough that I'll need to trim it, but time will tell. 

On a related note, I've been rather impatient with my inability to (physically) do much now that I'm done (for now) with chemo. My wife pointed out that my incredibly slow hair growth is a good indicator of how long it's taking the rest my body to heal. It's been helpful for me to see things from that perspective.

 

A New Kind of Therapy

So many therapies. 

When I first had the prostate cryoablation in April, everyone in the medical profession seemed to be calling it "cryotherapy" (probably because it sounds less invasive.) Next came "chemotherapy", which was a gentle way of saying, "We're going to poison you, repeatedly, for months, in order to try to poison the cancer in the process." I'm also undergoing some "hormone therapy" by means of the testosterone inhibitors and blockers that I'll probably be taking for the rest of my life. 

Now I'm on to a different kind of therapy.

On Wednesday, I had my first physical therapy appointment. Originally, they weren't going to be able to get me in until some time in January, but they called on Monday and asked if I could start on Wednesday. I was keen to start as soon as possible, but rather apprehensive about it, too.

Between my lack of physical activity this year and the abuse my body has taken from both the cancer and it's treatment, I am currently in the worst shape in my life. For example, when I need to lift up a leg to put a shoe on or get into a car, I have been using my hand/arm to reach down and help lift it. For whatever reason(s) my lower body has fallen much more out of shape than my upper body, which was confirmed at this first PT appointment. 

Part of the appointment was diagnostic. They had my medical records, so we talked about the weaknesses I'm experiencing and what some of my goals were for PT. I came up with such lofty goals as "be able to stay balanced again" and "be able to hike a mile in the woods again." My therapist then ran some tests of balance, resistance, stamina, etc. The simple resistance tests made it clear that, while I did still have some upper body strength, my lower body was pretty wimpy right now. 

I suppose that's not too surprising, considering that the had cancer spread to my lower spine and both hips before we discovered it. I remember looking at my PET PSMA scan from back in March and being blown away by how much cancer "lit up" in my hips in particular.

Anyway, I feel like I'm in good hands with this physical therapist. He seems to know his stuff. He gave me a set of exercises (stretches, really) for me to work on at home and went through each of them with me in the PT room. By the time I got home from the appointment, I was pretty wiped out by everything we had done, so that was the only set of exercises I did that day. 

I have managed to go through at least one set of each of the exercises on each of the days since. My therapist wants me to do two sets, though, one in the morning and one later in the day. So far I haven't managed it, partially due to how I feel and partially just due to stuff we've got on the calendar. I'm determined to get into it, though. It's the only way I'm ever getting back to hiking, biking, and kayaking.

With that, then, I'm off to do my PT exercises for today!

Reasons To Be Cheerful, Parts 13-20

In order to try to counteract the woe-is-me vibe of the last couple posts, I felt like another "Reasons To Be Cheerful" entry was in order. This is Thanksgiving week, after all. If I needed a good reminder to be thinking more about gratitude than personal anxieties, this is surely it.

13 - I should probably begin by saying that I'm very grateful to be alive. That might sound intentionally dramatic but, when we first got the "Stage 4: incurable, metastatic prostate cancer" diagnosis back in March, we were so scared that we weren't sure if I'd make it to the end of the year. I'm very grateful to still be here.

My wife's love and caring for me during this process initially prompted me to write a journal entry called, 'My Hero', back in April. Then, when I stumbled on the idea for posts like this, she was actually my #1 Reason To Be Cheerful back in June. However, It didn't feel right to now say something like, "I already mentioned my wife, so let's move on." There is literally no way I could be doing any of this without her. She has done so much for me during this battle, from making sure I eat well to helping manage my appointments and medications to holding me tight when the going got really rough and/or I got really down. She has showed me so much love and encouragement every single day that I am eternally grateful to have her by my side during all this. 

My daughter has been great through all this, too, although she no longer lives at home. It has been scary for her to see her dad so sick but she continues to be strong, loving, and supportive. I'm so proud of the young woman she has become.

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Similarly, I'm still grateful for all my previous "Reasons To Be Cheerful", but I won't repeat those here. Instead, I'll list some new(ish) gratitudes...

14 - I will be forever grateful to the friends who have visited me, sent heartfelt cards, gifts, messages of encouragement Facebook or Messenger, and generally supplied me with pats on the back as I went through chemotherapy. I don't think I can ever repay what that has meant to me.

15 - I'm SO thankful that the chemo is over, at least for now.

16 - I'm relieved that all the treatments I've received have been successful. 

17 - My doctors feel that I won't need any more poking and prodding until the end of January. ... Is that the same as #16?

18 - I'm grateful for the times when I have the energy to get outside and be in nature. The relative rarity of those times makes me appreciate them even more.

19 - All of the enforced "down time" I've experienced this year has reminded me of the value of slowing down and doing nothing at times. Just being quiet and alone with the thoughts in my head. That's got to be a form of meditation. I didn't realize I had lost the ability to do that until the chemo forced me to recognize it again.

20 - All of my enforced "down time" has allowed me to reconnect with music in ways that I haven't been able to for a while. My listening habits had become somewhat cursory and much less intentional in recent years. Lots of listening on the go but very little listening with the intent to fully absorb. Having little else that I could do this year has refocused and improved my relationship with music.

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The title for this particular series of posts was inspired by the delightful song from Ian Dury & The Blockheads called, "Reasons To Be Cheerful, Part 3". It came out when I was in high school around 1980 and was supposedly written in the aftermath of a near-death accident where a lighting roadie of the band's was electrocuted. It's actually a happy song, though, because even when Ian Dury went dark he still wrote fun songs.

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 For reference:  Reasons To Be Cheerful, Parts 11 & 12

Chemo Flashbacks and Dread

It's been almost a month since my last journal entry, and almost two months since my last chemo infusion. It would be nice to say that I'm feeling so much better now but I can't. I'm still very weak and have almost no stamina. I still need my cane for stabilization because my balance is atrocious. My issues right now could be due to the lingering effects of chemo, the testosterone inhibitors that I'm still on, or the fact that I've had almost no significant exercise since February (10 months ago). 

What's most likely is that the fault lies in some combination of the three.

In addition to still being very weak and tired, I seem to be having all sorts of nerve misfires these days. I've been calling them "chemo flashbacks" since the chemo really messed with my nerves and caused numerous problems throughout my body. Many of them are less severe now, but I still can't get used to them. Sometimes...

• I'll get some neuropathy (uncomfortable tingling) in my hands. 
• It will feel like someone is using my heel or big toe as a pincushion. 
• One of my eyelids will just start flickering like crazy. 
• It will feel like someone is jabbing me with something sharp.
  

The list goes on, unfortunately. The chemo brought these things on before and they often lasted for torturous lengths of time. Now, they are much shorter in duration but seem to happen much more frequently.

Then there are the hot flashes. I wasn't really sure if these were caused by the chemo or the lack of testosterone under my other meds. There are some days when they're few and far between but other days (like today) where I've probably had a dozen hot flashes through the day. Although I know my body is still trying to clear out the chemo drugs, I'm leaning more and more toward blaming the hormone meds for the hot flashes. It's a disappointing conclusion because I'll probably have to be on the hormone drugs for the rest of my life. (This cancer feeds on testosterone.)

Honestly, though, I feel like the main reason I haven't written in a while is depression from dwelling over the word that has been repeated over and over by my team of medical professionals... "incurable". I'd like to think, after everything I've been through since February, that I'd be "cured". Such is not the case and, even though doctors have been telling me that since the start, the reality of it still brings me down. It didn't help that I recently read about a guy who had the same cancer, a similar level of metastasis, battled it until he thought he had it beat, then it came back even worse a year later. 

People often talk about the physical issues associated with this battle, but not always about the mental and emotional ones. I'm not even sure I'm ready to talk about it here. I am, however, grateful to have a very open and communicative relationship with my wife and daughter, as well as friends who check in and send me messages of encouragement and love. Both have helped me navigate through this post-chemo darkness in my head. It's still there but at least I'm starting to feel like I'm starting to see some light.

The weirdest aspect of the depression is how it took me by surprise. I thought for sure that I had been through the worst (mentally and physically) and that the clouds were going to lift and I'd start feeling (mentally and physically) much better. Instead, I've gone into what my mom used to call "a funk" over the idea that I still have cancer and that it will still try to kill me. 

Not might... will.

How does anybody handle that kind of weight? I'm in the process of trying to figure that out. One thing I do know is that dying suddenly without any type of warning is definitely the way to go out. There's a heck of a lot of dread involved in knowing you've got a problem that is going to eventually kill you.